Long before my official fibromyalgia diagnosis, I began experiencing unexplained leg muscle weakness. It’s hard to explain to someone who hasn’t experienced it themselves for many reasons. Sometimes it is painful and others it is not. There are levels of weakness ranging from making walking or standing difficult to impossible. It is unpredictable, unstoppable, and debilitating.
Having not heard of fibromyalgia until my diagnosis combined with it occurring randomly and infrequently, the idea that it was a symptom of any chronic illness never crossed my mind.
I look back now and wonder how the heck I thought it was normal. Then again, considering how busy, chaotic, and stressful life was during the episodes I remember occurring during my teens and twenties, it makes perfect sense why I would have never connected it to anything other than burnout.
I continued to struggle with how leg muscle weakness disrupted my life for a decade after receiving my fibromyalgia diagnosis. I was frustrated by not being able to prevent flare-ups and brokenhearted over the events I couldn’t attend because of them.
Finally fed up with missing out, I began searching for ways to continue living my life even when one or more parts of my body refused to cooperate. Keep reading to discover what I learned.
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I am NOT a medical professional. Always consult with your doctor before making any changes to your health care plan.
What Causes Fibromyalgia Leg Muscle Weakness
The cause of weakness and pain differs between fibromyalgia patients. However, with most fibro patients there are mitochondrial1 changes (a change in the microcirculation and/or a change in muscle metabolism), that cause pain, fatigue, and muscle weakness by sensitizing muscle nociceptors.
The areas most affected are where the muscles attach to bones. While the pain and weakness feel like arthritis, fibromyalgia doesn’t damage joints or muscles2.
Related post – Is it Fibromyalgia or Something Else?
What Does a Muscle Weakness Flare Feel Like?
The pain and/or weakness may be widespread or felt in just one area. The severity of both can vary and are unpredictable. Your muscles may feel bruised, stiff, or lifeless.
In my own experience with leg muscle weakness, a flare could feel like my legs are heavy like I am walking in water or have sandbags tied to them. Sometimes they feel like wobbly and wiggly, sort of like Jell-O. But the most common flare I experience is where they just feel lifeless. Sort of like being paralyzed without actually experiencing paralysis. They lack the strength to stand or walk for more than a few steps. Sometimes this form of flare is accompanied by widespread muscle fatigue that affects my entire body.
One thing that never varies is my inability to predict or feel a flare come on. They come out of the blue, without any warning, and are noticed upon waking up in the morning or after a heavy fatigue driven nap.
Ways to Cope With Fibromyalgia Leg Muscle Weakness
I experienced more leg weakness flare-ups during the first decade after my diagnosis. I didn’t experience a decrease because I discovered a cure or used positive thinking to wish them away, because neither are possible. Instead, I got to know my body, began listening to it. and most importantly I learned to work with my fibromyalgia symptoms.
Whether you experience pain or not, muscle weakness in your legs may disrupt your daily life. It did mine!
Your doctor may prescribe medications like an anti-depressant (to block pain receptors) or muscle relaxers to help reduce muscle tension. They may also prescribe one of three fibromyalgia approved medications.
- Duloxetine (Cymbalta)
- Milnacipran (Savella)
- Pregabalin (Lyrica)
I personally find relief each night before bed with a combination of cannabis and a magnesium-rich lotion. Running a few PEMF treatments at the base of my spine also helps reduce the pain I experience throughout my lower back and legs.
Quite often my fibro leg muscle weakness flares include my entire body,. When this type of flare occurs, my only option is to rest. Days like this are spent in bed, lying on the sofa, or in my recliner.
These are the non-productive days that I have had to accept. I actually refer to them as my body’s recovery days. Because that is what feels like is happening. For what usually lasts for 24 hours, 48 at the most, my muscles feel like they are forcing me to rest to give them a chance to recover from the days, weeks, or months before.
Pacing to Reduce Frequency of Fibromyalgia Leg Muscle Weakness
One thing I truly believe led to the reduction of how often I experience extreme leg muscle weakness flares has been learning how to balance physical activity with my actual ability. By ability, I am referring to not pushing to or past the point of what keeps my pain level lower. This can be tricky and is something that I know I will never be able to do 100%. However, by staying within my body’s comfort bubble as much as possible, I can do more than when I was always pushing its limits.
Riding a roller coaster of super high and low muscle tension and pain levels is exhausting. It is not a sustainable way of living. But by attempting to flatten the track, at most I experience small hills and bumps. The result is taking longer to reach the point of exhaustion and less pain on a daily basis.
In between flares, I use a combination of muscle-strengthening exercises with resistance bands and aqua therapy. I miss walking in the pool and am impatiently waiting for my county to go up another tier on its phased reopening schedule so that my gym can reopen its indoor pool.
With my knee caps moving all over the place, walking on land for exercise is no longer an option, but I can tape my knees and get a great workout in water. Something I am looking into purchasing is a therapy pool for my home. I would love to hear from someone who has purchased one.
Massage is helpful when done regularly and not too intensely. I personally find that deep tissue massages often trigger a fibromyalgia muscle weakness flare. Whereas a regularly scheduled light massage relieves the tension without needing a day or two to recover. Talk to your doctor about what they think is best for you, give it try, and see if you experience the same results.
There are times when the lower half of my body feels weaker than the upper portion. When this occurs, I can usually use a mobility aid to help me keep up with any plans I have made. Which mobility aid I choose depends upon the level of weakness, whether I will have someone to assist me, and what a day out would demand my body to be capable of.
My rollator/transport chair combo is perfect when little walking is involved. A wheelchair is necessary and chosen when sitting up is my only option. This option also requires that I have someone to push the wheelchair. My final option is a power chair which will allow me to get around independently. I should have mine in a few weeks and am beyond excited to know that I will soon be able to do more with less pain.
Final Thoughts on Fibromyalgia Leg Muscle Weakness
Fibromyalgia leg muscle weakness doesn’t have to ruin your plans every time it flares. With alternative plans or modifications in place, there are many things that we can still do despite leg muscle weakness.
Learning how to live a life that doesn’t feel like a wild roller coaster may feel restricting at first. However, in time you will find that you will be capable of doing more than you were when you were going full speed ahead. Keep a journal of what you are able to accomplish and your pain levels. When you reach the point of your pain remaining at a low to moderate level, you should find the number of things you are able to accomplish growing.
What are your current leg muscle weakness coping skills and how are they working for you?